Thousands of Kentuckians with HIV or AIDS could have access to more effective treatment because of health care reforms if advocates and providers inform state officials what's needed to make it work — now.

"It's like building a plane while we are flying a plane," said Amy Killelea, senior manager for health care access for the National Alliance of State and Territorial AIDS Directors, a national advocacy group.

Killelea spoke Wednesday, the second day of a two-day conference on AIDS and HIV that drew advocates and health providers from across Kentucky to Lexington.

Kentucky is one of 16 states in the process of creating health care exchanges to provide new insurance options. By September, she said, a benefits plan is to be completed detailing the types of coverage private insurers need to offer to be part of the state system. By October, she said, enrollment is to begin. These changes are aa result of the new health care reform act.

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It's time for advocates to let state legislators and the Kentucky office of Health Care Reform know what they need because reform changes are evolving rapidly, Killelea said.

There are thousands of pages of documents streaming to the states about enacting health care reform since the July decision by the U.S. Supreme Court that allowed the law to move forward. That includes, she said, to laughs from the room, some 400 pages on how to streamline the application process for those currently without insurance.

"Multiple federal agencies are issuing hundreds and hundreds of regulations. I know because I've read them," she said.

The good news is that health care reform offers the promise that many of the roughly 8,000 Kentuckians with AIDS and HIV will have health insurance for the first time, replacing "a patchwork system with many, many holes and gaps," she said. This is especially true for those who are poor and could not get insurance before because of what she deemed discriminatory practices concerning pre-existing conditions.

And, she said, states are allowed wide discretion on how to implement the Affordable Care Act within the federal guidelines.

But its incumbent on people working with AIDS and HIV patients to make sure, for example, that the anti-viral drugs needed to keep HIV and AIDS patients alive are covered at a reasonable cost under the plan, she said.

The theme of this year's conference was Turning the Tide Together. Sigga Jagne, manager of the HIV/AIDS branch in the Kentucky Department for Public Health, said those words matter. Even though the number of AIDS and HIV patients in Kentucky is relatively small, prevention and early testing are public health matters because AIDS is an infectious disease. One infected person can easily lead to more, she said, and studies have shown that those people receiving treatment are less likely to infect someone else.

People might have outdated perceptions about who is affected by AIDS/HIV, she said. For example, male-to-male sexual contact accounts for about 65 percent of current infections in the state. But the number of infected women continues to grow, and the majority contract the disease through heterosexual contact. More concerning, she said, is the 13 percent of HIV/AIDS cases where the cause is unclear.

"That is eye-opening," she said, adding that better treatment and more widespread prevention are key.

And the potential for positive change under health care reform is "huge," Killelea said